If all had gone to plan, I would have visited the oncology unit last Friday and got my infusion pump removed and then no more hospital visits until Wednesday 8th June when my next round of chemo starts. But plans are made to be broken....
First up, last Friday morning Teresa took a call from radiology at the hospital, my oncologist has called for an urgent MRI scan, this to take place this afternoon (Monday). Then when we came to remove the infusion pump we found that it was not yet empty, apparently one of the lines was slightly kinked, so back to the hospital on Saturday to remove it, fortunately it was well empty by then.
Overall, Friday and the weekend was not one of my better times, I felt quite ill, I suspect I have got a cold or similar virus, and I felt very tired, listless and depressed. Yesterday I started to move around a bit more and today I am feeling a little better, except that I have very bad diarrhea - a normal consequence of chemo. I have drugs to counter it and they appear to be mitigating the worst of it. Other side effects of the chemo I currently have are dry mouth and throat, tingly lips and sensitivity to cold on my hands and mouth. I continue to have real problems focussing my brain, reading is a pain, about 2 pages of a book is the most I can comprehend at once. I understand this is commonly called chemo brain.
While at the hospital last Friday to attempt to remove the infusion pump we were told that we must not leave until the oncologist had caught up with us. I assumed this was something to do with the urgent MRI scan. When the oncologist arrived he was unusually positive, apparently the PET scan had confirmed the tumors in my liver and lung, and while there was a couple of other abnormalities seen in my liver, there was no additional indications of cancer in my body. This is VERY positive, I had been prepared for additional small mets in lymph nodes or elsewhere. The objective of the MRI scan is to quantify the other abnormalities in my liver and determine if they are likely to be mets or not.
Both Teresa and I got the opinion from the conversation that my liver surgeon is probably sharpening his scalpel at this time.
The MRI is a bit of a challenge. The scan is scheduled to start at 2:00 PM and take up to 1.5 hours. However I can have no food or drink 4 hours in advance and the main scan is to be followed by a second one 2 hours later. It will be a long day.
Hopefully I will be spending some time at work this week, and really looking forward to a long weekend away in our caravan next weekend, however at this stage it is all about waiting to see what actually eventuates.
Monday, May 30, 2011
Wednesday, May 25, 2011
No Longer Chemotheraphy Naive
Chemotherapy Naive is a term used by oncologists to describe people who have not experienced chemo. It is a good place to be in, unless you really need it.
Earlier this week I got a 3 page "summary" from the oncologist, detailing his diagnosis and the treatment plan. It was a really good and informative note, but his assessment that my case constitutes "incurable disease", caused a double take. Logically I was aware of it, but seeing it in print was hard. My actual prognosis is not discussed, I would like to get a bit further down the track before thinking about that.
The PET scan was done yesterday, it was a long drawn out process. In order to work effectively I needed a minimum of stress and activity in a quiet room to allow the radioactive tracer to find its way to high areas of glucose uptake. Cancer normally uses a lot of glucose due to rapid cell multiplication so if we can avoid activity and stress, which is the normal user of glucose, the tracer will only go to the cancer areas. The results of the PET scan should be available after 2 days or so, they then go to my oncologist, liver surgeon and my GP so I will be pestering each of them on Friday until I get an answer.
Today started out tough, we were both quite stressed in anticipation of the chemo. However it all went fairly well. Even the parking issues at the hospital, which has been a nightmare since the earthquake, did not turn out to be a big deal, more by good luck than good management.
The actual chemo regime (FOLFOX6) has quite a bewildering array of drugs, some by IV via my PICC line and some in tablet form. Most of the drugs are to counter side affects and enhance the action of the core chemotherapy. The tablets I take using a fairly complex schedule over 5 days. There was a 2.5 hour session of IV drugs this morning and I am now on a 46 hour infusion delivered from a pump bag attached to a belt on my waist and feeding through the PICC line.
So far I am feeling OK, a bit spaced out and aware that I am feeling different. I have had some tingling on my lips and throat after contact with cold air and fluid but nothing significant. I did take a call about work a few minutes ago and had to do some thinking, it went OK but I did feel quite tired just after.
So what next - most likely I will feel progressively more tired and sick as the infusion goes in and for a further 2-3 days after. But I may not get much worse and will easily cope, or may get VERY ill, hopefully more the former than the latter, but whatever. As always, I feel very confident in the support I get from the hospital and they have made it very clear that we MUST call them at any time if I am uncomfortable about anything.
Earlier this week I got a 3 page "summary" from the oncologist, detailing his diagnosis and the treatment plan. It was a really good and informative note, but his assessment that my case constitutes "incurable disease", caused a double take. Logically I was aware of it, but seeing it in print was hard. My actual prognosis is not discussed, I would like to get a bit further down the track before thinking about that.
The PET scan was done yesterday, it was a long drawn out process. In order to work effectively I needed a minimum of stress and activity in a quiet room to allow the radioactive tracer to find its way to high areas of glucose uptake. Cancer normally uses a lot of glucose due to rapid cell multiplication so if we can avoid activity and stress, which is the normal user of glucose, the tracer will only go to the cancer areas. The results of the PET scan should be available after 2 days or so, they then go to my oncologist, liver surgeon and my GP so I will be pestering each of them on Friday until I get an answer.
Today started out tough, we were both quite stressed in anticipation of the chemo. However it all went fairly well. Even the parking issues at the hospital, which has been a nightmare since the earthquake, did not turn out to be a big deal, more by good luck than good management.
The actual chemo regime (FOLFOX6) has quite a bewildering array of drugs, some by IV via my PICC line and some in tablet form. Most of the drugs are to counter side affects and enhance the action of the core chemotherapy. The tablets I take using a fairly complex schedule over 5 days. There was a 2.5 hour session of IV drugs this morning and I am now on a 46 hour infusion delivered from a pump bag attached to a belt on my waist and feeding through the PICC line.
So far I am feeling OK, a bit spaced out and aware that I am feeling different. I have had some tingling on my lips and throat after contact with cold air and fluid but nothing significant. I did take a call about work a few minutes ago and had to do some thinking, it went OK but I did feel quite tired just after.
So what next - most likely I will feel progressively more tired and sick as the infusion goes in and for a further 2-3 days after. But I may not get much worse and will easily cope, or may get VERY ill, hopefully more the former than the latter, but whatever. As always, I feel very confident in the support I get from the hospital and they have made it very clear that we MUST call them at any time if I am uncomfortable about anything.
Thursday, May 19, 2011
Not A Great Day
Yesterday Teresa got a call from Southern Cross Radiology, I am booked for a PET scan next Tuesday. With chemo due to start tomorrow (Friday) this a is a bit of a problem as I should have a PET scan before chemo starts, as a base for comparison, and the scan won't work properly with fresh chemo in my system.
This sort of uncertainty upsets me, plus I had quite a difficult day at work yesterday that flowed into today. So I started today with a curdled brain and feeling really stressed and anxious. The logical side of my brain was OK, knowing that all would be sorted but I could not seem to get through to my "other" side.
Today started out with a phone call from the radiology clinic, asking lots of questions and giving me lots of prep and after care information - all good and fine. But they also made it clear that I should not have chemo tomorrow, as planned. At their recommendation I called the oncology unit to try to sort it out, I had planned to call anyway. The nurse I spoke to agreed that it did not seem right to have the chemo first but needed to confirm the situation with the oncologist, who was out of town. She would keep trying him and get back to me.
In the meantime I went to the hospital to get the PICC line installed. This all went OK, the only minor issue is that it is in my right arm instead of the left arm. I had been told prior that it was likely to go into my left arm as I am right handed, however the nurse doing the job explained that it would really have no impact on the use of my arm and the route in was a bit shorter and easier via my right arm. I am all for simplicity so right arm it is.
After leaving radiology for the PICC job we went to oncology. We had to deliver documents from the PICC insertion to oncology and I was looking forward to trying to sort out my chemo start date, which we did. They had been in touch with the oncologist, my new chemo start date is now Wednesday 25th May and I seem to be on a Wednesday cycle now. This may well have an impact on working time, but I am not too fussed about that now.
Had a wee rest this afternoon and got some good sleep, I have not been sleeping well for 10 days or so. I am feeling quite a lot better now.
This sort of uncertainty upsets me, plus I had quite a difficult day at work yesterday that flowed into today. So I started today with a curdled brain and feeling really stressed and anxious. The logical side of my brain was OK, knowing that all would be sorted but I could not seem to get through to my "other" side.
Today started out with a phone call from the radiology clinic, asking lots of questions and giving me lots of prep and after care information - all good and fine. But they also made it clear that I should not have chemo tomorrow, as planned. At their recommendation I called the oncology unit to try to sort it out, I had planned to call anyway. The nurse I spoke to agreed that it did not seem right to have the chemo first but needed to confirm the situation with the oncologist, who was out of town. She would keep trying him and get back to me.
In the meantime I went to the hospital to get the PICC line installed. This all went OK, the only minor issue is that it is in my right arm instead of the left arm. I had been told prior that it was likely to go into my left arm as I am right handed, however the nurse doing the job explained that it would really have no impact on the use of my arm and the route in was a bit shorter and easier via my right arm. I am all for simplicity so right arm it is.
After leaving radiology for the PICC job we went to oncology. We had to deliver documents from the PICC insertion to oncology and I was looking forward to trying to sort out my chemo start date, which we did. They had been in touch with the oncologist, my new chemo start date is now Wednesday 25th May and I seem to be on a Wednesday cycle now. This may well have an impact on working time, but I am not too fussed about that now.
Had a wee rest this afternoon and got some good sleep, I have not been sleeping well for 10 days or so. I am feeling quite a lot better now.
Saturday, May 14, 2011
Here We Go Again
My CEA results have been increasing since the beginning of the year. Last check was 6 April and that was 6.8, up from 2.7 3 months before.
Our GP referred the CEA test results to the local hospital and shortly after I got a request for a CT scan and more blood tests. Last Tuesday we met with my oncologist who gave us news I was not expecting, the scan shows a 2.9cm lesion in my liver, close by the previous resection, plus a 1.6cm lesion in a lung. I had either expected no visible CT scan result with that CEA level, it had to get to 20 last time before a tumor was visible, or maybe a small tumor.
I certainly was not prepared for two organs to be affected. The lesions are 99.9% probably cancer mets. The big issue is that normal protocol is not to have immediate surgery when more than one organ is affected, but to use chemo to shrink the tumors, if possible, and see if any other tumors appear.
So last week I met with the oncologist, next day the colo-rectal clinic (I am primarily still in their care), then attended a chemo training session, to help Teresa and I understand the side effects, how they are dealt with, what to watch out for, and how the process works.
Next thursday I get a Pic Line installed, then the following day I start 12 two weekly cycles of chemotherapy, using FOLFOX.
Felt really down last Tuesday, when I got the news, but feeling somewhat better now, thanks to amazing support from Teresa, Christchurch Hospital and my employer.
Our GP referred the CEA test results to the local hospital and shortly after I got a request for a CT scan and more blood tests. Last Tuesday we met with my oncologist who gave us news I was not expecting, the scan shows a 2.9cm lesion in my liver, close by the previous resection, plus a 1.6cm lesion in a lung. I had either expected no visible CT scan result with that CEA level, it had to get to 20 last time before a tumor was visible, or maybe a small tumor.
I certainly was not prepared for two organs to be affected. The lesions are 99.9% probably cancer mets. The big issue is that normal protocol is not to have immediate surgery when more than one organ is affected, but to use chemo to shrink the tumors, if possible, and see if any other tumors appear.
So last week I met with the oncologist, next day the colo-rectal clinic (I am primarily still in their care), then attended a chemo training session, to help Teresa and I understand the side effects, how they are dealt with, what to watch out for, and how the process works.
Next thursday I get a Pic Line installed, then the following day I start 12 two weekly cycles of chemotherapy, using FOLFOX.
Felt really down last Tuesday, when I got the news, but feeling somewhat better now, thanks to amazing support from Teresa, Christchurch Hospital and my employer.
Subscribe to:
Comments (Atom)